| Abstrakt: |
Introduction:Individuals born with congenital heart disease (CHD) and people with Down syndrome (DS) are distinct populations now living well into adulthood. These groups share risks of reduced employment, neuropsychological impairment, and poor quality of life (QOL). CHD occurs in 40-60% of people with DS; is it unknown whether CHD mediates these outcomes among adults with DS.Hypothesis:There are lower employment rates in adults with both DS and CHD.Methods:This was a cross-sectional survey of adults ages 18-45 years with DS and their guardian. Study advertisements were sent to the NIH Down Syndrome Registry, regional DS groups, and cardiology clinics. The study survey included self or proxy-reported medical history, employment and volunteer experience, quality of life (WHO-QOL-Disabilities module), mental health problems (self-report plus Glasgow Depression Scale), and caregiver burden (Zarit Burden Interview). Outcomes were compared between groups: DS+CHD and DS-CHD.Results:287 participants completed the study, out of roughly 1100 eligible subjects recruited. 36% (n=104) reported having CHD. Most CHD types were atrioventricular canal or atrial/ventricular septal defect, and 56% reported cardiac surgery in the first year of life. There were no significant differences in subject age, sex, or trisomy 21 type between groups. There were similar rates of paid employment in those with and without CHD (54% vs. 50% respectively, p= 0.50). DS+CHD subjects reported significantly more volunteer activity (32% vs. 19%, p< 0.01). Overall cohort history of stroke was 3%, seizure 12%, and mental health problems 69%. There were significantly higher rates of stroke and seizure in DS+CHD subjects (p< 0.01 for both), though no difference in mental health problems (p=0.67). Self-reported mean QOL score was 66.6± 12.1 (scale 1-100 with 100 indicating best quality), with no significant difference between groups (p= 0.52). Caregiver burden was significantly greater in DS+CHD (p= 0.03).Conclusions:Having CHD is not associated with reduced employment in adults with DS, despite higher prevalence of stroke and seizures. Volunteer participation is more common in those with CHD. Mental health problems and reduced QOL are prevalent in adults with DS regardless of CHD. |
